About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Sunday, August 31, 2008

Wow! FYI, I had asked Shalon if she could post the time line photos of me that were on her site, to MY site, and she did! Cool, huh? Thanks Shalon! She's amazing! I'm in such a great mood - I had taken that medicine that knocks me out, so I had gone back to sleep a couple hours! Mark woke me up to a couple of eggs in a basket - yum! Pretty soon we're heading over to moms to play games, so I'd better start getting ready!

Saturday, August 30, 2008

Greetings everyone!

How's it goin'? Well, @ my sister Celia's suggestion, she and her son Mark took my Mark and I to dinner this evening! We went to a sushi place downtown - and since our nephew Mark had worked in a sushi restaurant as a sushi chef - we let him order our dinner! Imagine my surprise when I looked down @ the menu and saw SABA (Mackerel)! Yikes! What? Here I thought my little Saba had this exotic name and come to find it means Mackerel?! Dang! Oh well - I still love her name - I think it suits her! She's just too darned cute and she has an aura about her that makes her popular! Actually, Saba is also the smallest island of the Netherlands Antilles! Wow! Who knew? I'll have to ask "the real Saba" about it next time I see her in CO! She's a doll! I haven't seen her the last 2 procedures I've had @ Swedish - she's either been off or just not working on the floor I've been on! Dr. Yakes patients are either on 6th or 9th floor. FYI - Saba has "won" the distinction of being Employee of the Year @ Swedish - apparently I'm not the only one that thinks she's a doll - isn't she beautiful?!

I'll have to wind this up soon, I took some meds that are making me drowsy! The doctor in CO is trying a new med on me - Neurontin and that knocks me out! Right now I'm staggering 4 of those daily and getting some much needed rest!

Hopefully everyone enjoys this nice long weekend! My sister Celia has generously been sharing some books with me - the Stephenie Meyer series, so we're enjoying those, as both of us are avid readers! I'm half way through the second one (New Moon) and she brought over the third one in the series this evening (Eclipse)!

Celia also brought me a couple pair of sandals that no longer fit her - and they're just right for me! Not to leave my Mark out of the loop - she brought over some baking pans that her mother-in-law no longer used! We love these fun goodies!

Celia and Markie stayed over for a bit and played Farkle and got a kick out of our furry kids, Dulce, Midori and Giovanni! They have such unique personalities and are definitely a handful! Midori tends to be on the "heavy" side, and Markie accurately described her as an "ottoman"! That's hilarious! Poor Midori! Dulce was all over Celia, and Giovanni tends to hover around everyones feet! That and/or is snuggling up to my Marks neck/chin! It's a shame that Greg and Davis couldn't join us this time!

Right now my avm is in a passive mode and I've got my pain under control, so I am a happy camper! Thanks to everyone for their prayers as I am doing well right now! I am grateful to be feeling well enough to have a great evening with my family without having any avm incidents!

Much love to all! Keep checking back for updates on my avm world!

Cyndi

P.S. As always, please do keep up w/Shalons site as well! http://sites.google.com/site/shalonsavm/Home

She has done so much for me in just knowing I'm not out there alone! She is an amazing bundle of energy, knowledge and all heart! Shalon is bringing so many people together and has gotten me excited about having a site and sharing all my adventures with all of you! Shalon actually has two sites and is always updating them! You must read Keiths story! Thanks Shalon - hugs!

Friday, August 29, 2008

Hi Everyone!

Well, since I had already taken some time off work (today and Tuesday) - I decided to have a little necessary work done on myself too! The past year, I've had to have a tube put in my ear to allow drainage for fluids normally absorbed by the body - but w/me - the avm isn't allowing that to happen! So, if I don't have that tube in my ear, I just hear my pulse in my left ear and can't hear much else! That gets old real quick - so I knew it was time for a tune up! The ENT I had been seeing moved to FL, so this would be my first time to get a tube put in W/Dr. Zane! So this morning I got Saba dressed up and we headed to the doctors office. There was a 2 year old in the waiting area that kept running away from her mom and making a bee line for Saba! The mom kept telling her, "that's not your baby"! For those of you tuning in late ... Saba is my "therapy bear"! A co-worker had taken her nephews to the Build a Bear place in San Antonio, and got herself a friend too. Once I saw hers, I had to have one! Named after one of the techs @ Swedish Medical Center that is from Eastern Ethiopia, Saba accompanies me all over town! I like taking her w/me to the grocery store, Barnes & Noble or just running errands! Of course she's always a big hit! Saba's favorite place to go? Grandma Mary's for game night! Our family enjoys getting together to play Mexican Train, Farkle or just eat and visit w/each other and Saba is a big part of our family now! Hey, I figure ... you know what? People are going to stare @ me anyway w/the avm - so what if I'm almost 50 and carry a bear? She makes me feel better! Back to the ear now!

Had to have a hearing test done first, then in a few minutes, Dr. Zane had that t-tube put in my ear! I had been in his office a couple weeks ago, and had mentioned Shalons web site to him. Dr. Zane told me he checked out Shalons site and really enjoyed it! I tell everyone that they can get to my blog from that site as well!

Met Mark for lunch and then came home do a load of wash or two! So glad it's the weekend! On the way home from work, Mark picked up some wound care supplies that came in - the Aquacel ag is what is helping the wound on my left cheek heal really well!

Tuesday, August 26, 2008

Just for fun, I thought we would ad some photos of my little Saba! Our family was very involved in the Olympics as you can see!

Our favorite of course was Michael Phelps! Saba made sure she had the right suit, swimcap and goggles! Of course we had to be involved in the gold medal ceremony!

Ok! Back to avm stuff! I am doing great so far! Of course I'm on steroids - I only have 2 days left of them, darn! No more bleeds - which is awesome! Mark has been doing an amazing job keeping my wound area clean and dressed, so it is healing nicely! We're hoping by the time we go back to CO Oct. 6th, 7th and 8th - that the wound area will finally be closed after being so deep! Mark is so patient and takes the time to make sure the area is clean, puts more ointment, layers of dressings and makes sure we have all the supplies necessary! I'm currently trying to get off the Percocet and on to another new med that is not a narcotic! It's knocking me out though - but @ least I am getting some much needed rest! The one good thing is I've lost some weight. W/the meds, I can't drink and sometimes don't have much of an appetite. Right now I do though, w/the steroids! I'm just taking it one day @ a time and doing what I need to survive!Thank you family and friends for looking in on myself and Shalons web sites! Shalon came along right when I needed that extra boost in dealing w/this avm! She is bringing so many people together that either have avms, or know someone that has one! Her web site is full of good, medical information and she puts a lot of work into it! I'm hoping in the future to make sure she and I meet up again during one of our appointments! Shalon does not stay overnight like I do though - she gets sent home after being in recovery for a while. I've come to like staying overnight because I get excellent care from the nurses @ Swedish and they have become friends! Here I am with a new nurse to me - her name is Gina and she and I bonded over knowing we love to read! She had just finished reading Pillars of the Earth, a recent favorite book of mine!Please do check back periodically on both our sites, as I'm sure we will do our best to keep you informed on the latest! Thank you for all your prayers and support!

Saturday, August 23, 2008

Hi Everyone! Ok! This is my first shot @ trying this - Shalon has gotten me involved as I enjoyed her site so much! I'm hoping I can keep up and am doing this right! Maybe I'll graduate to including pictures later! I tried earlier, but not sure I know what I'm doing yet!I was so ready to go to CO for this procedure - seems that darned avm acts up right before I go back for a treatment! The lower left eye area was all puffed out and I was just having a hard time functioning! I missed Thur/Fri. of work - but I knew I just needed to get some rest before the trip! While we were on the first part of our flight - I was wanting to take some medication for pain and couldn't find my meds! I think I noticed that when we landed in Houston. From Houston our flight was headed to Alb. NM, and while we were there, I called ahead and talked to Dr. Yakes patient coordinator to tell her to please have some prescriptions ready for when I arrived! Sitting in the middle seat and not having any Xanex was not helping my situation one bit! I felt like running up and down the isle of the plane! Come to find, I did have my meds with me though! I noticed them @ the car rental place in my tote bag!We arrived w/just enough time to pick up our car rental and head over to Swedish Medical, as we had a consultation w/Dr. Yakes! We got to meet Eric - Dr. Yakes new P.A. I had brought a list of questions w/me - but Dr. Yakes seemed vague about the entire thing. He says we are making progress and we can't stop in the middle of the war! Well of course not! I can't imagine anyone else taking care of this but Dr. Yakes! We just have to keep after this avm!After seeing Dr. Yakes, we go check in to the hotel. Just to put our luggage in the room and start heading downtown to Dr. Reeds office - again, he is the head of Voice and Swallow Inst. in CO - and he checks my airways to make sure all is well before Dr. Yakes goes ahead w/the emoblization the next day! Dr. Reed was very happy w/what he saw and he also prescribed an ointment I need to maybe heal my ear area quicker. I still have to wear the moist wound care healing dressing on my left cheek from when Dr. Yakes got me w/24 cc's of alcohol last November! That area is finally healing well!Once we were done w/Dr. Reed - Mark told me he wasn't feeling well. I called the patient coordinators for Dr. Yakes and they referred us to the Rocky Mountain Urgent Care center. I just wanted to make sure and get Mark checked out to see that he was ok! By the time we did all that - we were so ready for dinner! Went to our favorite pizza place (Ricos) near the hospital, but it was already closed! Went on to Pappadeaux and ordered our dinner. We hadn't been there but 15-20 minutes when I felt something on my neck. Yup - I was bleeding. Can't we even go out for a decent dinner w/out having to deal w/avm stuff? We hurried to the ladies room where Mark put a piece of surgiseal on my ear, so we got it under control. We had been going all day on 2 hours sleep, so by this time, we were exhausted! Went back to the hotel and crashed!Up early the next morning to get to Swedish by 7:30am. Got there, preregistered and sat in the waiting area. Very soon, one of the nurses says they are ready for me! I get into the hospital gown, etc. .... and one nurse tried a couple of times to get my IV going, but she failed. Another nurse took over and finally did get it going on my other arm - OUCH! Another of Dr. Yakes P.A.'s (Rhonda) asked the nurse something like, "Ok - does this mean we're clear for take off"? Or something to that effect. The nurse gave Rhonda a blank look and Rhonda goes, "come on people, get w/the military talk"! "If I say, the Eagle has landed" that should tell you Dr. Yakes is here"! That's Rhonda for ya! Anyhoo .... as we sat and waited, and waited and waited for my turn to be taken into OR - we could hear this terrible screaming down the hall! Apparently, Dr. Yakes had a couple of children as patients and they were reacting to the alcohol in their system! It was just awful hearing them - but I would have thought that some pain meds would knock them out? I brought Saba w/me of course, so we watched The Today Show while we waited for my turn to go to OR! Finally about noon time, it was my turn! I remember thinking as the anesthesiologist put the mask over my face .... "next thing I know, I'll be waking up hearing the nurse asking me to breathe"!

I hear Dr. Yakes gave me 9 1/2 cc's of alcohol this time and I had a bleed during the embolization, so I think he stopped @ that amount.

Well, I woke up feeling pretty good, actually! I had my favorite recovery room nurse Rick - he is awesome! He makes sure I am comfortable above all else and is funny too! No angiogram this time, so that was great! Got dinner served in recovery - that was weird and next thing I knew, the nurses on 6th floor were calling to find out where I was! Rick said the computer showed my room wasn't ready - anyway, off I go!

Rhonda Sharp (P.A.) showed up in my room to give me my prescriptions and discharge papers! She knows we like to do this in the evening, that way we can leave @ whatever time we are ready in the morning!

Mark showed up after getting some rest and picking up a few things I needed and we settled in for the night! I wanted to take a shower and wash the blood out of my hair and then I felt lots better! Mark went back to the hotel late that evening to get some rest and I started reading a book Celia had loaned me called Twilight by Stephenie Meyers.Next morning after Mark showed up w/my favorite White Chocolate Mocha from Starbucks, and we were watching TV enjoying our coffee, when I noticed I was bleeding! I told Mark I was bleeding and I don't think he heard me - I said it louder and the nurse was in the room - in a few seconds, the front of my nightgown was covered in blood. Eeek! We hurried over to the bathroom sink, Mark got the wound care bag and we got the situation under control! I am only the 2nd patient of Dr. Yakes this nurse has had, so she says, "has this happened before"? Uh, yeah - we were pretty calm about it all - we're pretty used to it by now. About 10 minutes later, my cell phone rings and it's Shalon! She and her husband Joshua were downstairs and asked if they could come up to visit! I quickly changed into my regular clothes and was ready by the time Shalon and Josh arrived! It is just so great to meet someone who totally understands what you are going through! The husbands had their bonding experience too, I'm sure, being the caregivers! They didn't have too much time to visit, as Shalon was about to pre-register for her embolization! We hugged and wished each other luck!Went to pick up several prescriptions, then back to the hotel to reorganize things. Decided to take a drive into Boulder, @ Rhonda's suggestion. We had told her we thought about driving into Estes Park - so we did both! Boulder proved to be just what Rhonda described it as - weird in a funky kind of way. We both liked Estes Park better - lots of shops and beautiful scenery! Did that and then drove back to Denver - ate dinner @ Ricos and then back to the hotel! Mark was already in bed, and I was in the bathroom getting ready for bed, when I had another bleed. Darn! It was ok - nothing we couldn't handle!I called Shalon that evening to see how she was doing, and she said Dr. Yakes hit her w/15cc's of alcohol and she didn't feel very swollen! My left eye was swollen shut! I had asked Shalon what time their flight left and we both found out we were flying S.West about the same time! Sure enough, we got to meet up one more time @ the airport! and took a couple more photos! Those photos are available for viewing on Shalons site: http://sites.google.com/site/shalonsavm/Home.As always - our great thanks to all our friends and family that love, pray and support us on this journey! Please check back on my site and Shalons for updates on our progress!

Friday, August 22, 2008

Where to begin the story that apparently needs to be told! I was born in Eagle Pass, TX. And my first recollection of having an AVM (arterial venous malformation) was actually @ 11 years old or so. Let me back up a bit and say that doctors always told my mother to keep an eye on what they thought was a “hemangioma” or strawberry colored birthmark on my left cheek! One day while my mother was @ the grocery store and my sister probably @ a piano lesson, I had been home alone and was lying on the couch watching TV. I felt a little bump on the inside upper part of my ear that I picked at, and before I knew it, I was seeing blood everywhere! I want to say I picked up the phone and called the grocery store to try and have mom paged, but I don’t remember completely. Maybe I went to the neighbor’s house and they called the store.

In any case – within another year we moved on to McAllen, TX w/my mom’s new job. We always knew the left side of my face was warmer than the right and that I had something unusual, but no doctor wanted to take on the challenge of knowing what to do with me.

Anyway, throughout my life, I constantly kept hearing, “Did you have your wisdom tooth pulled”? “Why is your face swollen”? Looking back now, it is nearly impossible to see any of that swelling – what swelling? In my mid to late 20’s I started having occasional nosebleeds. We weren’t sure what was causing this – we thought high blood pressure?

Saw the best ENT locally and he couldn’t see anything wrong with me! Went to see Doctors @ UTMB in Galveston that started trying to get rid of my problem (still not clearly diagnosed @ this point) by reconstructing my left ear! The doctors took a thin piece of skin from my left thigh – about the size of a business envelope that they would be using on my ear! Of course the avm came back worse than ever – my poor ear! It looked like a pit bull had gotten a hold of it! I used to have nightmares that my ear was falling apart piece by piece! I called mom one time to come to my apt. about 2 am because I was bleeding from my ear.

I don’t know how long the area took to heal, but somewhere along the line, I went back for more treatment with these doctors. (My left thigh took a while to heal as well – lots of itching where that skin was taken! The doctors @ UTMB felt they wanted to see if this “thing” was deteriorating the bone on the left side of my face, so the doctors broke my jaw and somewhere down that line legated the carotid artery and had to staple vessels and I even see a hinge in the x-ray! This meant having my mouth wired shut for 6 weeks! By this time I was in my late 20’s and had already met Mark. He took care of me as I healed from that trauma! Poor Mark – he used to put Chinese food in the blender, as I had to eat everything through a straw! Those wires I had were cutting my upper lip, so I would cut the fingers off those thin, latex gloves and put one of those fingers between the wire and my upper lip! I remember as Mark and I were preparing for our marriage, we told our parish priest about Mark taking care of me after surgery. Fr. Paul Hesse told us that if we survived all that – surely our marriage would be fine! Well, we realized these doctors were not helping – so we stopped looking for a while for anyone to help.

I don’t recall how we got Dr. Zide’s number in New York, but Mom and I took a trip to see him and Dr. Berenstein as well! Actually, the latter doctor appeared on a show where a man named Jeff Richie (?) had a huge facial avm, and Berenstein was one of the doctors trying to treat it. These doctors in New York referred me to a doctor in Houston they felt could help. This would turn out to be Dr. Mawad.

I had about 5 or so treatments with Dr. Mawad – he was putting a glue-like substance in the area to stabilize the avm. After those treatments – he knew he really couldn’t do much more for me. I was told to wait for a call from them, that they were going to put a team of doctors together to help me. I finally get a call and their best offer was: we’ll bring your body temperature down to zero, take muscle from your back to put on your face once we remove the mass and there is a 65% chance you won’t make it off the table and might bleed to death. Hmmm…. I think I’ll wait for technology to improve, but thanks anyway!

By now it’s almost the year 2000 and I’m in my early 40’s and having more nosebleeds getting more severe! We would go to the emergency room and by the time my turn was up – I had either stopped bleeding or had decided to leave and go home. I’ve always had a weight problem and I used to think – no matter how much weight I lose, or how pretty my make-up comes out or how nice an outfit I have on – I still have the facial avm that people were focusing on!

One Sunday after Mass, (Dec. 21, 2003) we were heading to the grocery store near our home, when I felt a tickle in my nose. I thought I was going to sneeze and took a tissue out from my purse. I blew my nose and here comes the blood! We hurried home and I bent over the bathroom sink for lack of knowing what else to do! The blood felt like I was chugging fluid and felt like I would drown! Mark called an ambulance to take me to the hospital! Like before though, no one wanted to touch it or could do anything for me! I can’t remember which group of doctors had finally called this thing what it is – an AVM – but I had given up hope that anyone could help! I remember wondering why this was happening to me – this is not the life I ordered! Yeah, that looks funny on that t-shirt from the “What On Earth” catalog, but I was living it!

Meanwhile, my sister Celia had been surfing the net for information and trying to find a doctor to help! She gave me all the information she found – and the first number I called was not the people I needed – but they knew who I needed to get in contact with and gave me Dr. Wayne Yakes phone number! We wondered if this was the same doctor one of the Youth Choir Members in our church choir had gone to see, as she had a similar problem on her leg! I never saw her, but I had heard this girl wasn’t happy with Dr.Yakes, nor the results of her treatments. I called Dr. Yakes office @ Swedish Medical Center and spoke with Lezlie Frank, at the time Dr. Yakes patient coordinator! She was instrumental in getting us up there! Leslie had me speak with Julie LaBadie – Dr. Yakes main nurse and she assured me they would help. I kept telling her all the times I had been let down and promised help – but she kept telling me that Dr. Yakes would be the one to help me!

So, in May 2004, I had my first consultation with Dr. Yakes! What a great guy! A big teddy bear of a doctor – nothing to be afraid of! Before seeing him though, Mark and I made a trip to the Mother Cabrini Shrine in Golden, CO! Pope JPII had visited the Cabrini Shrine when we (our church choir) had been invited to sing for World Youth Day in 1993! We knew Dr. Yakes was our last hope and we did lots of praying!

Dr. Yakes felt he could help, so I’ve been seeing him since! At one point, Dr. Yakes said he had a little more than 50% of the avm. Unforunately, avms are so unpredictable and everyone heals differently, so there is no set time that Dr. Yakes can tell me that this will all be over with! I used to get so depressed when strangers would ask me what happened to my face – but once I found Dr. Yakes, it was easier answering questions or getting stared at, because at least I knew I was finally getting help! I’ve always told my co-workers here that I feel like an alien from another planet because people look @ me as if I am one! When I go to CO, I feel like I’m on my home planet because I see other people who look like me! I’ve been with Dr. Yakes now for 4 years of treatments – I was sometimes putting off going, trying to not miss so much work! I would go every 2 ½ months to 3 months in between embolizations. Had to go back to CO for a couple of emergencies that we weren’t sure how to handle here! With my family helping us more financially, I am able to go more often to see Dr. Yakes, so now I won’t wait any longer than 8 weeks! I try to make it a point to go every 7 weeks now! We need to keep ahead of this avm or at least get it stabilized! I was spoiled for 2 years w/out a bleed and I’d like to get to that point again! I have no idea how many more procedures I have left – but I do know that I have a lot of family and friends that support me emotionally and keep me in their prayers!

I have very recently met Shalon Whitgob – Rhonda, one of Dr. Yakes P.A.’s had told me about Shalons web site, thinking it would help answer some of my questions or @ least help me feel not so alone out there! Boy was she right! After looking up Shalons site, I quickly e-mailed her and was so happy she e-mailed back right away! We kept e-mailing for a few weeks until we met just a few days ago! As luck would have it – both Shalon and I had appts. w/Dr. Yakes w/in a day of each other! We both also see Dr. Reed – the head of the Voice and Swallow Institute of Denver, CO! Since Shalon and I both have facial avms, Dr. Reed checks to make sure our air passages are all clear before Dr. Yakes does an embolization on us! Another thing Shalon and I have in common – we both have wonderful husbands that help us get through these terrible avm incidents! I am so happy to know Shalon – she seems very level headed, kind and beautiful! We both feel that as long as the bulk of the avm is gone and there is no bleeding – then we are where we need to be!